Monday, February 28, 2011

Mayo, God Help Us

It always strikes me as typical of the man he was, the days my dad chooses to visit me.

They are often moments illuminated by limelight, as he was one of those who was drawn to an audience. I sometimes wonder if this was because he was an only child, and because he was entirely alone in the world at the age of 15, by which time both his parents had died. Maybe his showmanship was born of nothing more than loneliness; the strange sense of comfort that he drew from being part of a crowd; the sense of family that he found as a member of a committee, an association, a staff.

He comes to me on match days, when I remember Sundays in September from my childhood; the odd occasion back then when Mayo would make it to Croke Park. He would leave at dawn, to get the train. Arrive back to us late, waking us up with some little presents, with stories of who he met, what Dublin was like and his analysis of where the match went wrong.

Like many of his generation, he regarded the wearing of a GAA jersey off the playing pitch, and for the purposes of showing support, as a form of hooliganism. An outing to Dublin - be it for a medical appointment, a meeting or a match - required the wearing of a suit and the carrying of an overcoat, for as he told us often, it’s a wise man that carries his coat on a fine day.

He comes to me too at election time. He brought me to my first election count in the Traveller’s Friend Hotel when I was 4 years old. It is because of him that I actually understand the PR-STV system, that I revel in talk of transfers, and the excitement of the day when democracy delivers us the process by which we declare some victors, many others losers.

He loved the circus that was created around politics, but there was also a deep desire in him to see the west of the country and the farming community properly represented.

I remember hearing some interviews he did on local radio replayed in the days after he died. Speaking on the level of knowledge that most Dublin politicians had on matters agricultural, I believe his response was "they wouldn't know the front of a sheep from the back of an ass."

Whatever you may think of Enda Kenny, do not underestimate the difference it will make to the county to now boast that the Taoiseach is from down the road in Castlebar.

It's not as good as an All-Ireland, but it is something, it promises much, and in terms of euphoria, weeping old-timers and bonfires around the parish pump, it has already delivered in spades.

Monday, February 21, 2011

Does this make me a Twit?

I have joined the twitter.

I'm not entirely sure why, but I blame boredom and an increasing reliance on social networking to feed my need for constant attention.

I also thought it would be the handiest means by which I could inform people of major events - such as, oh, I don't know, maybe a certain call from a certain hospital for a certain major surgery.

If I was really into the twitter, I'd probably call it a 'twansplant'.

If you click on the button over there on the right, you'll see my tweets. As far as I know, you can look at them without signing up to the twitter yourself - if you want to be able to reply to a tweet however, then you have to have an account.

Thank you.

Friday, February 18, 2011

My review of a cinema outing

My friend suggested we go see ‘Never Let Me Go’ last weekend.

We had both loved the book, grim and unsettling, but brilliant for its writing and its sinister prescription for solving organ failure.

I should have known. I should have realised that Hollywood would take the detached narrative of the book, condense it into a chorus line of sadness and present it in feature film length, until it extracted tears.

At least 15 people walked out during the viewing I went to in Cineworld the other night. They were mostly couples, who mistakenly thought this would be some kind of heart-warming love story that would aid their efforts at pretending they were happy on Valentine’s Day.

It’s no such thing. It brings us back to the time when transplantation made its appearance on the medical stage. A breakthrough, no less. The response was to spawn a new population of humans, created and raised for the sole purpose of providing organs to those who are sick. It was accepted practice in this make-believe world, enshrined in government policy, without the conscience of a needy society suffering even a sleepless night over it.

When these innocent children have grown up and donated all they can, they don’t die. In their sad language where life is not a series of experiences, but a process, they “complete”.

The man behind the story, Kazuo Ishiguro, was born in Japan, a country where organ donation was outlawed entirely up until the last decade or so. Living in such a place provided the debate and the twisted fodder for such gross imaginings.

So many scenes moved my cold heart. The realisation of Kathy at the end that the lives of donors are not so different to the lives of those whom they save; that they all go through something they don’t really understand, and they all die in the end.

The dark moment where Tommy, realising there is no hope for him, stands on a lonely road and screams at the world.

Seeing Keira Knightey, her hands and arms bruised, much like my own after a stay in hospital or increasingly after routine blood tests have punctured my tired veins at various points, needles being moved around under the skin to try and coax some blood out.

It is on my mind more and more that I am going to be sick forever. Even with transplant, I will be tested constantly, on medication always, worried and worried and worried at every bug, every high temperature, every drop or gain in weight.

It exhausts me to think of the road ahead, like considering a long haul journey with stopovers in unpleasant places.

On the upside, this was a role Knightley was born to play. It suited her waif-like figure to fade away and flatline on screen.

I was not the better for having seen it. I cried in there, cried in the bathroom afterwards, and sat in a daze on the bus home.

The only film to have drawn such emotion from me was E.T. which I saw on the telly when I was 8 years old. I still don't understand why he had to go home.

Thursday, February 10, 2011

Happy Day

There were three wishes made.

The gathering last week was to celebrate the engagement of him to her, and it coincided with a birthday that he wanted to keep quiet.

The scene at the dinner table - three opposite three. On this side, in by the fire and away from the cold, there sat the dialysis crew. Me, him and another.

Across the way, his fiancée, still getting used to her title, and two good friends down through years of the happy and the sad.

The cake was brought out and the song sung badly. He blew out the candle, for it was his special night, but being the way he is, he thought of us too.

The tea light on the table was used to set the wick aglow again, and it was passed along.

His fellow hostages of the same misfortune duly took their moment, registered their wish, and exhaled a laboured breath from bodies broken.

Bad luck to tell anybody what you wished for, but easy to know that on this night, with these three, the same request was made in triplicate.

No more thought was given to it. Until last night, when he got the call.

He has just come out of surgery. Transplant done. His wish fulfilled.

Wednesday, February 9, 2011

State of the Nation Address

In my annual effort at raising awareness of organ donation, I made an appearance on the Tubridy Show on 2FM yesterday.

I think it went well. The researcher on the show woke me when she rang to ask if I would come on. I think this made for better radio, as I am an angry beast when roused from my sleep in any event, not to mind when I am roused for the purpose of talking about dialysis

Go here if you want to download the podcast or just play the interview on your computer thing.

Much obliged.

Thursday, February 3, 2011

Betrayed by this country

Please read this article and await my wrath:

I cannot believe this.

No. It's truer to say I wish I didn't know this.

Of all the fucking irresponsible behaviours of the HSE. In the past, they have displayed gross incompetence, but this? This is just carelessness, this says they just can't be bothered.

Making an effort to procure organs should be a requirement of their work. When somebody collides with their fate in tragic circumstances and is brought to hospital; once the medics have fought like hell to save their lives, once death is declared, for those doctors and nurses the next thought should be contacting a transplant coordinator.

Somebody needs to have that conversation with a bereaved family, to find them in their darkest hour, and in the most gentle and hushed tones try to show them this little light that is embodied in me and hundreds like me.

To explain to them that there are hundreds of people waiting for a special call, and that through this devastating upheaval in their family, they today find themselves with the power to save a number of lives.

I maintain enough faith in humanity to believe that the reaction from a good percentage of those bereaved would be positive, that they would see an opportunity to salvage some good from this tragedy.

The figures makes me feel stupid. Here we all are, going around trying to encourage people to carry organ donor cards. Ha. Why should we bother? It's a waste of an effort, a waste of precious energy that I don't have in good supply.

Evidently there is no interest in the hospitals in helping us out. We can create all the awareness in the world, but we can't start chasing ambulances.

It sickens me to think of all the organs that have gone. Think of it like this, reader - think if you were stranded in a desert and all the water bottles had been buried on you. Think if you were in desperate need of food and all around you they were setting fire to hamburgers.

If I feel a desperation over it, how must the others feel? Those who are waiting for hearts or lungs or livers, who have an end date that beckons to them, without a treatment like dialysis to sustain their sick bodies. For them, this recklessness is the worst kind of betrayal.

Are our lives worth so little? I am 28 years old. I am educated and I want to be something, to contribute something, but my society has evidently decided I am not worth the bother.

When I was listed for transplant in August 2009, they told me I would probably wait two years for a kidney. Suddenly that seems so optimistic.

Fuck this.